The story of Emma's journey of neurofibromatosis brain tumors and blindness.

Friday, October 3, 2014

But She is Still Smiling

Today took a chemo turn. I had a pumpkin patch play date with two other families planned at a local farm. We were going to take pictures and play and have a fun morning. We got up, had breakfast and got dressed. As I was getting Cora, our youngest dressed Emma asked for a barf bag. This happens every Friday but she has never actually thrown up on a Friday morning. Usually if she makes it through the night we are good for the day. I went to get her one anyway. When I returned to the living room Emma yelled, "Too late." and she was right. Poor baby tossed her cookies. So there goes the playdate. We all got into comfy clothes and put a movie on, now we are on house arrest for fever watch.

See that is the thing about chemo, it is impossible to truly settle into a routine. She is usually sluggish but okay on Fridays, except for the two weeks when she had a virus and we ended up in the ER on Friday. But typically Friday is an okay day, just a slower day. Emma was sad we had to cancel but happy she got a movie day. She is wearing a smile on the couch right now watching Lilo & Stitch. I figure we will cuddle, paint nails and bake today. Hopefully she will be sick just that one time today.

As of yesterday Emma is two months into a 12 month chemo program. Later this month she is getting an MRI to see if the tumor is responding to the treatment. We are also going back to UC Irvine for a post op follow up and to get Emma a specialized eye exam to determine how much sight she has left. As of now Emma is legally blind but has a good amount of sight left in one eye, it is our mission to preserve that sight. To

Emma made me "coffee"

help her she may be fitted for glasses so her good eye does not strain from doing all the work. I think Miss Emma will be so cute in glasses and I am sure she will have fun picking out a pair, it will just be getting her to wear them and not take them off all the time that will be the hard part! I will also have to track down a pair that looks similar but has clear glass for her twin Gracie. I can already predict that Gracie will want to match.

Emma's calendar project is going well. We only have a couple more photo shoots and then we will be ready for printing!

I wanted to write a quick thank you to everyone who has sent us little pick ups lately. Getting fun mail really cheers us all up and we are so very grateful that you continue to remember us and lift us up! As this goes on some of it will become routine and get easier but in many ways it will become harder. It is all of you
at our side that makes it possible to continue. Also a huge thank you to everyone who went gold with us for the month of September. Thank you so much, we love you!!